Kaysee Hyatt's Why
Kaysee Hyatt suspected something was wrong with her infant daughter, Addison, from the time she and husband Trapper brought her home after her December 2012 birth. “She was extremely fussy, had a hard time eating and sleeping and her left hand was always clenched, plus she never played with toys using her left hand,” Kaysee said.
But it would be six months before her suspicions were confirmed — a MRI showed that baby Addison had had an ischemic stroke at some point during the 28 days before or after her birth. No cause was found.
Stroke happens in about one in every 3,500 births — and the consequences may be harsh and long term. For instance, it is the leading cause of hemiplegic cerebral palsy, or paralysis on one side of the body caused by a brain injury, which Addison has. She has also experienced sensory impairments, speech delays and a seizure. “Thankfully it was only one, but her risk is always there as with any brain injury,” Kaysee said.
The Hyatts got Addison into intensive therapy to help her learn to use her left side, speak and cope with other challenges resulting from the stroke. Even though no cause was ever identified and they were doing all they could to help her recover, Kaysee still carried guilt that she had somehow failed her daughter. She needed support.
“When we left the hospital after being told of our daughter’s stroke, there were no local resources or pediatric stroke support groups in Renton,” she said. “We had no idea how common this was.” An Internet search turned up three online groups — CHASA, the International Alliance of Pediatric Stroke and Brendon’s Smile (now known as World Pediatric Stroke Association) — all organizations dedicated to awareness and information. “Social media became my saving grace to connect with others,” she said. “There I began building relationships with local families. I was amazed at how many pediatric stroke families there were here in the Pacific Northwest and that’s when the idea to establish something local began to take root.”
Kaysee formed the nonprofit Pediatric Stroke Warriors (PSW) to connect other Pacific Northwest families with support and resources. In the beginning it was mostly by word of mouth that families connected with PSW. As they grew, so did their supporters, connections and visibility. “We now host an informational website, social media pages and have an established Stroke Fund at Seattle Children’s Hospital to support financial aid to impacted families in our region,” Kaysee said. This past January they began providing their “Warrior Bag” and “Brave Box” to support any newly diagnosed family or a child recovering from stroke. The Warrior Bag includes The Pediatric Stroke Patient and Family Guide, published by the University of North Carolina Comprehensive Stroke Center and the International Alliance of Pediatric Stroke. The Brave Box is assembled specifically for each child based on their age and interests in an effort to make their day a little brighter and their time in the hospital or during an appointment more positive.
Beyond support, PSW works to bring awareness of pediatric stroke, through events, public speaking opportunities and distributing educational materials. “It sucks the air out of the room when you tell people Addison had a stroke, but what I love is that you can see that she’s okay and she’s a fighter,” Kaysee said. “It’s definitely scary, but it’s not anything to pity her over because she’s doing amazing.”
In 2015, Kaysee was recognized by the American Heart Association/American Stroke Association for her efforts as a Stroke Hero. In October 2015, the PSW families took part in the AHA’s 2015 Puget Sound Heart & Stroke Walk, walking in honor of, and awareness for, children impacted by stroke.
In her presentations Kaysee always talks about F.A.S.T., but she also acknowledges that delayed or missed diagnosis of stroke in children is common. In newborns, the first symptom of a stroke is often seizures involving only one arm or leg.
“Having a daughter who suffered a stroke at birth, knowing that stroke can impact children of all ages and that it has already impacted so many, is what led me to do more,” she said. “That simple reality changed my life. I hope that sharing Addison’s story offers hope. That is my why.”
Everyone has a reason to live a longer and healthier life.
Pediatric Stroke Warriors produced a beautiful video to raise awareness of stroke in children. (Courtesy of Pediatric Stroke Warriors)
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